lthomas521

For a long time, I have suspected that the brain can use a little bit of anaerobic metabolism, and maybe some people's brains are better at it than others. This may explain why I don't pass out even when I was standing up with a blood pressure of 48 over undetectable. My doctor, a nephrologist, was stunned. "Why don't you pass out?" he asked. Of course, the aftereffects of using anaerobic respiration in the brain could be pretty bad. So maybe you'd feel better if you did faint than if you had presyncope (as long as you don't hit your head on the way down). At least you'd get circulation to your brain more quickly. The other thing is that some people develop habits, almost as automatic as a reflex, that help compensate for the hypotension. For example, I automatically flex my neck (chin down to chest) or bend over at the waist. A nurse taught me to do that, and it really helps me keep my footing.

Does the doctor know you have NCS and POTS? Calcium channel blockers are vasodilators, and they can cause syncope as a side effect. Wouldn't a CCB make your NCS and POTS much worse? Might that in turn make your migraines worse?

I can and do work. I can't play.

The treatments used for mitochondrial disorders are mostly over-the-counter nutritional supplements. Even though I haven't had any investigation of mitochondrial disease, I'm doing much better since I started these supplements.

The thing I don't like about depot injectables is that they stay in the body for a very long time, which is a problem if you have an adverse event. In general, depot injectables are useful in situations where patients can't be relied upon to take their medication on a daily basis (e.g., some antipsychotic drugs) or if a single injection would replace a whole lot of daily injections (e.g., the pituitary suppressing drug used in patients with prostate cancer). If you want progesterone-only contraception, there's an effective progesterone-only pill called Cerazette, but it isn't available in the United States. You can get it in Canada. Also, there's a new implant, Implanon, that's just becoming available in the United States. If you have a problem with that, you can have it removed. There are plenty of combination estrogen-progestin contraceptives around, from ordinary pills to the vaginal ring. I wouldn't recommend the patch, because it produces higher blood levels of the hormones. The vaginal ring provides the best cycle control--less breakthrough bleeding. No one really knows whether estrogen and progesterone are involved in POTS, although most people with POTS are premenopausal women.

I would try vitamin B12 shots and see about a "rebreather mask." Both vitamin B12 and carbon dioxide are powerful scavengers of peroxynitrite, which is believed to play an important role in perpetuating fibromyalgia.

Yes, nausea can be part of the migraine phenomenon. That's why people used to call them "sick headaches."

Hm. Sounds like another case of narcissistic personality disorder. Not you, the doctor. Here are the diagnostic criteria, according to the American Psychiatric Association: A pervasive pattern of grandiosity (in fantasy or behavior), need for admiration, and lack of empathy, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following: (1) has a grandiose sense of self-importance (e.g., exaggerates achievements and talents, expects to be recognized as superior without commensurate achievements) (2) is preoccupied with fantasies of unlimited success, power, brilliance, beauty, or ideal love (3) believes that he or she is "special" and unique and can only be understood by, or should associate with, other special or high-status people (or institutions) (4) requires excessive admiration (5) has a sense of entitlement, i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations (6) is interpersonally exploitative, i.e., takes advantage of others to achieve his or her own ends (7) lacks empathy: is unwilling to recognize or identify with the feelings and needs of others (8) is often envious of others or believes that others are envious of him or her (9) shows arrogant, haughty behaviors or attitudes That doctor showed signs of at least four of the diagnostic criteria during a single office visit. Poor man, he's mentally ill! You need to find a sane doctor. By the way, your headaches might be migraines. Ask the pharmacist if you can take magnesium glycinate. It really helps me.

Back when I was very sick, a 24-hour urine test showed that my aldosterone metabolites were 8 times the upper limit of normal. The nephrologist said that this was probably my adrenal gland's attempt to correct my blood volume, which was abnormally low for other reasons. No one has figured out the other reasons yet.

I never had anything like that when I was on metoprolol, which is another beta blocker. Talk to your doctor and the pharmacist if you want to stop taking a beta blocker. You might end up with problems if you stop taking it abruptly.

How could this chiropractor tell that your ileocecal valve is "stuck open"? Does he have x-ray vision? How could he tell that it "closed" after he rubbed you? Sounds like sheer quackery to me. Either that or he has superpowers. Thank goodness he doesn't use those powers for evil!!! Isn't it convenient that the things that his competitors have a monopoly on (namely, your prescription medicines) are bad for you and the cause of all your problems--as if you were the picture of health when you started taking them. Isn't it a bizarre coincidence that the things that he promises will lead to your recovery are products and services that he can sell you? Why don't the people who have had their ileocecal valve surgically removed get POTS? If you have POTS and a history of gallbladder disease, I think you should be tested for celiac disease, especially if someone else in your family has a history of gallbladder disease or undiagnosed intestinal troubles. If you do have celiac disease, then the remedy is to eliminate gluten from your diet. I guess that's an "alternative medicine" thing to do, except that regular MDs will give you the same recommendation, on the off-chance that they ever think to test you for celiac disease. If you have celiac disease, you probably have malabsorption and "leaky gut," so you'll probably have lots of food allergies and maybe some nutritional deficiencies. So you may have to be on a restricted diet and take supplements until your gut heals. By the way, a doctor of osteopathy (DO) is a real doctor, whose training is pretty much the same as an MD's, these days.

Is it worse when you stand up? What about your blood pressure? Does your pulse go up when you stand up?

Cortisol levels and POTS? Has he published anything on it?

There are lots of glycoprotein hormones, including erythropoietin (Epogen, Procrit). However, you have to take them by injection, because you digest them if you take them by mouth. I'm really skeptical that taking a "glyconutrient" by mouth would have any effect other than directly on the bowels or indirectly as a result of changes in digestive function. For example, psyllium seed taken by mouth can decrease the rate at which you absorb sugar, so it could help diabetics control their A1C, which will improve their overall health.

Autonomic neuropathy is a general term for any disease of the autonomic nervous system. Just another term for dysautonomia. Since your autonomic nervous system is responsible for regulating your heart rate and blood pressure, POTS is classified as an autonomic nervous system disorder.

How would they help cell-to-cell communication? That doesn't sound plausible to me. But the "glyconutrients" are probably some sort of soluble fiber, which might be good for your bowels. Lots of people with POTS have bad problems with constipation. Soluble fiber is also good for people with irritable bowel syndrome, which involves diarrhea and constipation.

My guess is that ultimately they will figure out that it is excess FSH, not lack of estrogen, that causes postmenopausal bone loss. http://www.medicalnewstoday.com/medicalnews.php?newsid=42034 Estrogen tells your pituitary that it has secreted enough follicle-stimulating hormone (FSH) and luteinizing hormone (LH). When your ovaries stop producing much estrogen at menopause, the pituitary doesn't get that "feedback." So it just keeps secreting greater amounts of FSH and LH, as if it were trying to kick-start your ovaries. That's why FSH levels rise at menopause. In fact, postmenopausal women who aren't taking estrogen produce so much FSH and LH, which is passed intact in the urine, that they can donate their urine for the FSH and LH to be extracted and used as a fertility treatment for younger women. Estrogen replacement therapy will decrease the amount of FSH that the pituitary secretes. That decrease in FSH, rather than the effects of estrogen on bone, may be what is preventing osteoporosis. Ultimately, I think that researchers might develop an FSH blocker to use instead of estrogen-type drugs to prevent osteoporosis. But that is years in the future. As for hypovolemia, I have asked numerous doctors why I have hypovolemia. The answer always translates to "the autonomic system moves in mysterious ways." But stopping unnecessary blood loss sounds reasonable to me. And menstruation is really unnecessary. Lots of women in our grandmothers' generation had maybe 2 dozen periods in their lifetime, what with going through menarche relatively late, having many children, and breast-feeding them. When I found out a few years ago that you can deliberately skip periods by just continuing to take the active pills, I was thrilled, and then enraged. Why in the name of good common sense didn't anyone tell me this when I was 13!!!!? My sister always said, "If men had periods, there'd be a cure by now." So there was a cure all along, and they didn't tell me. They have some 'splainin to do.

I think that Maggs is right. There is supposedly an acquired form of von Willebrand's disease that can result from hypothyroidism. http://www.ncbi.nlm.nih.gov/entrez/query.f...p;dopt=Abstract A friend of mine had it about 10 years ago. She had to postpone her hysterectomy until it was under control. When she called me to ask if I'd ever heard of von Willebrand's, I said, "Yeah, it's common in Doberman pinschers." She said, "Are you telling me I have a dog disease?" I said, "Don't worry. It means you're a purebred."

Here's another article about tilt training. The subjects had neurocardiogenic syncope. There was no control group. http://www.jstage.jst.go.jp/article/jhj/45/5/833/_pdf

Anyone with gallbladder disease should be tested for celiac disease, especially if vaguely defined digestive troubles seem to run in the family.

What bleeds is the endometrium, or the lining of the uterus. It bleeds because the hormone levels drop so much that it is no longer supported and it disintegrates. During the early part of the menstrual cycle, the estrogen tells the endometrium to thicken and develop. After the release of the egg, the progesterone produced by the corpus luteum (the sac that produced the egg) in the ovary starts to suppress the growth of the endometrium (in opposition to estrogen) and tells the endometrium to start producing nourishing substances to support an embryo. If implantation occurs, the endometrium will get continued progesterone support from the placenta. If no implantation occurs, the endometrium will start to disintegrate when the progesterone support from the corpus luteum stops. The bleeding results from the disruption of the blood vessels as the endometrium disintegrates. So, the hormones are not telling the uterus to bleed. The drop in hormones is telling the body to stop providing support to the endometrium, which then disintegrates and is shed. If you are taking a estrogen/progesterone type of contraceptive, you will have a "withdrawal bleed" when you take the placebo part of the regimen. That's because the progesterone support is "withdrawn." Of course, you can use a regimen that continues with the active pills and skip periods. That's the theory behind Seasonale, but you can use any estrogen/progesterone combination drug to achieve the same thing. So, if you have no withdrawal of progesterone, you will have no bleeding. That's why women who are using the progesterone-only types of birth control (e.g., Implanon) don't get periods. There are all sorts of reasons why a woman can bleed very heavily with her periods. Two easily overlooked causes include hereditary bleeding disorders, such as von Willebrand's disease, and the effects of some prescription drugs, including Prozac. Look for "menorrhagia" and/or "metrorrhagia" listed under side effects in the prescribing information. If you have no uterus, you will have no endometrium to develop and then disintegrate. So no bleeding. Of course, if you have endometriosis, you'll have little (or maybe not so little) bits of endometrium in places where they don't belong, but that's another story.

Perhaps if they hold me underwater for a little bit longer each time, I'll learn to breathe underwater. There's been one trial of "tilt training" that I know of, and it was for neurocardiogenic syncope in adolescents. The report suggested that these patients did well with the training. However, it was not randomized. In other words, the subjects were not randomly assigned to the training or a control group. That leaves open the possibility that the healthier people participated in the training and the sicker people refused it. That is a major methodologic problem with nearly all of the trials of exercise-type interventions. Even if you use randomization, the really sick people tend to drop out, because they can't tolerate the exercise. Also, the subjects seemed to be otherwise healthy adolescents who had a fainting problem but weren't getting better with or couldn't tolerate other therapies. None of these kids had POTS or EDS, as far as I can tell. If you want to try this training program, at least have someone to catch you when you fall down. You might want to use a blood pressure cuff to see what your pulse and pressure are doing during the training. http://circ.ahajournals.org/cgi/content/full/100/17/1798 Personally, I never faint, and if the cure for my problem were really this simple, I wouldn't have any problem.

It's a good thing you didn't fall into the oven! Here's a good resource for dizziness and related disorders: http://www.tchain.com/otoneurology/disorders/index.html

I have one of those things that you put in the microwave to heat up. That helps a lot.

Wow, Persephone, that sounds awful. If birth control pills are not working for you, have they considered a GnRH agonist? It suppresses your pituitary, so it doesn't secrete FSH and LH, so you don't get the ovarian stimulation that drives your cycle. They can give you a little add-back estrogen to keep you from having menopausal symptoms. http://www.endofacts.com/luprondepot/